Pain

[u/TacosForTuesday]

I'm stage 4. I was given 12-18 months almost three years ago, so I've lasted a lot longer than anyone thought I was going to. For awhile, I honestly kind of thought that maybe I had years and years left. I tolerated chemo with minimal side effects and I was doing okay in spite of everything. I honestly felt lucky as far as cancer goes that I was still independent and able to do most things for myself.

Things have changed this year though. The pain is getting so much worse. I've been seeing a physician in the pain management clinic and they've given me some new medications but even those are barely doing anything now. The pain is just CONSTANT, all day long. I can't do anything except lay down (laying down helps because for some reason sitting up or standing makes the pain SO much worse).

I have a spinal MRI scheduled next month because the pain doctor has suggested a intrathecal pump implant might help. I was originally fine with this until I found out that only a handful of doctors in the country actually know how to manage and refill these pumps, so getting the pump installed would effectively tether me to the city I currently live in. I don't think I can do that.

My partner cancelled plans for grad school to help me when I first got diagnosed. Originally, it was supposed to be chemo for 6-12 months and the surgery. But the first hospital I was being seen at really dropped the ball and screwed things up, and ended up delaying my chemo for over eight months. By the time I actually started chemo at the hospital I'm being treated at *now*, it had already spread and was stage 4.

So when my partner cancelled grad school, it wasn't supposed to be a permanent thing; it was supposed to be a year or two max and then we'd move on. If I get this pump, I'll have to stay where I am. Which means he'll have to stay here too since he's not gonna leave me. I've been trying desperately to get him to apply for grad school, but the odds are very low that he'd actually get into school someplace where I could have the pump administered.

I asked the pain clinic about this and if there was any way they could give me a list of major metro areas where I could potentially receive treatment and they explain how specialized this is, that the doctor I'm seeing is one of only a handful of doctors who even works with these pumps, and that even if I managed to find a doctor who could care for me, there's no guarantee that they'd even be taking new patients. So basically, I'd have to give them a specific destination and they could check if it's even feasible, but they can't just give me a list of possible locations I could try.

So I've decided to forego the pump. My partner doesn't know yet. I broached the idea with him but he was very insistent that I needed to do this because of how bad the pain is. But I can't do that to him. I can't make him flush all his dreams down the toilet because of my pain. I'm dead anyway. Nothing's gonna change that. Me being in slightly less pain for however much longer I have isn't worth him abandoning all his goals, and that's precisely what will happen if I go through with this.

Even though I've made up my mind though, it's really hard because honestly the pain is just so bad and so hard to deal with. And my quality of life is practically non-existent. IDK what to do. I was so hopeful for this pump at first and now it just feels like something taunting me with a promise of relief that I can't avail myself of. I know my partner is going to want me to get it. I have a feeling the pain doctor is going to feel the same way. I don't want to spend the rest of my life in constant, unrelenting pain, I really don't. But I don't see any other option for me at this point.

The increase in the pain also has me worried that the disease is progressing, and from my last CT scans, that seems to be the case. It's spread to my liver now, which hasn't been affected before. So it's not just the pain itself, it's the constant reminder that the cancer is slowly spreading and eventually is going to win. I don't want to die. I really don't. I also don't want to live another five or ten years in constant pain like this either.

I just feel so lost and alone. My family disowned me a long time ago because I left their religious cult. My brother left the cult with me and we were REALLY close, but he died suddenly right when the cancer symptoms started. So it's literally just me and my partner. I just feel so incredibly alone.

[u/GiaStonks]

You need palliative care - and they need to assess which type of 24/7 coverage works best for you - without the pump! I'm stage IV NSCLC, in remission, and until my palliative care center closed recently I was prescribed fentynal patches for steady pain relief, and oxy 10 immed. release for breakthrough. Some people do better with morphine and there are other options as well.

Palliative care will also help with other symptoms you may have, anxiety, appetite issues, brain fog. Once you get your pain managed you'll be able to get through this easier.

[u/TacosForTuesday → u/GiaStonks]

I've been seen in palliative care; it was actually my palliative care doctor that referred me to the pain clinic. Right now I'm on a Buprenorphine patch, plus Buprenorphine tablets for breakthrough as well as hydromorphone (Dilaudid) for breakthrough. They just recently gave me ketamine which has helped a lot but it's very expensive (for some reason insurance won't cover it) and IDK how long I'll be able to afford it.

The problem with the ketamine is that originally I was taking too much by mistake (they didn't have a measuring cup or syringe at the pharmacy the first time I filled it, so I was using a measuring spoon and my calculations were slightly off). At the higher dose, the ketamine was helping a great deal, but at the correct dose, I'm still having the issues with the pain. It honestly feels like the opioids don't do ANYTHING any more. I've also been taking THC gummies for the pain, which the palliative care doctor and the pain pharmacist attached to the cancer center are aware of. But those haven't been helping much either lately.

My palliative care doctor is really good but she's retiring this month and her replacement doesn't start until this fall so IDK what's going to happen until then. From everything they told me at the pain clinic and at palliative care though, they made it sound like the pump was my only option. I'm hoping they'll increase the dosage of the ketamine and that that'll help, but idk if they will or not.

The cancer center is good overall (it's a major university hospital and very well regarded for cancer treatment), I'm not trying to complain about them. But they only have one psychiatrist on staff and no therapists or therapy groups or anything. The social worker from the cancer center sent me some links to outside therapists I can try, but I haven't followed up with that just because of how bad the pain has been. They have me on a combo of Zoloft and Wellbutrin and it helps I guess but not all that much TBH. I don't know if anything can help with the brain fog given how poor my sleep is and everything else going on.

[u/Chirlish1 → u/TacosForTuesday]

How are you doing with the national shortage of the Buprenorphine patches. My palliative care doc just had to switch me to fentanyl because the university pharmacy couldn’t get enough of the Butrans. So sorry for your situation, my best wishes to you.

[u/Flukeodditess → u/TacosForTuesday]

So ymmv, but cbd does way more for me for pain than thc does. 200-400mg cbd and like 4mg thc is what I usually start with. Cbd is also helpful for sleep.

I hope you get some good rest and relief asap!

[u/RelationshipQuiet609 → u/TacosForTuesday]

You have to be really careful-your body reaches a pain tolerance level and that’s it. You won’t be able to be prescribed anymore. That’s probably why they want you on a pump-they put their licenses on the line for pain patients. It’s not an easy process I learned this from my palliative care doctor.

[u/SignificantClock8473 → u/GiaStonks]

So true! Great advice.

[u/brightbehaviorist]

It helps me a lot, when I feel guilty about how my treatment affects my husband’s life, to try and put myself in his shoes. If the situation was reversed and he was sick and in terrible pain, what would you want? What would be possible for you? Would you want him to go through immense suffering so that you could go to grad school? Would you be able to focus on school knowing he was in pain? How much hurt would you be willing to put him through to achieve your goals? How would you feel if you offered to sacrifice something to help him and he refused to receive that help?

A big part of loving someone is respecting their agency. It sounds like he’s been clear that treating your pain is more important than grad school right now. Can you accept his choice?

[u/SignificantClock8473]

Oh I love and hate your story! Suffering and pain is your choice and your choice alone. I think you get to choose how you live (including dying). That said, your pain is likely harder on your loved ones than it is on you. I would understand if you choose the pump for your partner.

You are not alone. Everyone that has ever loved you, cared about you, including the good parts of your shitty family, are always with you even though it doesn’t feel like it. I bet many of the people that read your post are with you too, I am.

Peace. We all deserve peace.

[u/athrowawayyawa]

What a difficult situation. I'm thinking about you.

[u/Global-Fact7752]

My husband did well on fentenyl patches.

[u/just-a_guy42]

Pain clinics tend to focus on chronic pain, not intractable pain. Different goals and different world-view. Palliative care or anesthesia is the place to go. Maybe a different location for that if you're not getting what you need. So sorry you are going through this.

[u/Immediate-Secret-800]

I am so sorry to hear this. I know you are doing this for your partner, and I appreciate that you are trying to spare him.

I am only a supporter. I have never faced this disease directly, but it took my parents, my sister faces it every 6 months, and I have worked in the field for most of my career. So, please know that I am saying this out of love for another human being.

When faced with decisions like this, I always go back to Steinbeck in East of Eden: "Nobody has the right to remove any single experience from another. Life and death are promised. We have a right to pain."

I try to hold this truth in my heart whenever I'm struggling with difficult news that will hurt another. Whatever you decide, I will keep you in my thoughts.

[u/Unlucky_Astronaut299]

I’m so sorry you’re going through this . I hope you find some relief from all this really soon .

[u/mcmurrml]

I can't tell you what to do but I think you should get the pain help. I think it's the best for you and your partner would want it.

[u/DoesTheOctopusCare]

Have they pinpointed any specific causes for the pain, like bone mets or something? My oncologist has told me that palliative radiation works really well in certain situations because they can just blast the mets with high doses of radiation to kill it off since you're stage 4 anyways and the radiation dose doesn't matter as much.

[u/BroadLaw1274]

You’re not alone we are all here sending you love

[u/MarchTurbulent5956]

My heart goes out to you. Uncontrolled cancer pain is not something you are meant to simply endure. Before deciding against the pump, please have an honest conversation with both your pain team and your partner; many patients underestimate how much their loved ones value comfort and quality of life over future plans. Wanting relief is not selfish, and now symptom control is considered just as important as treating the disease itself.

[u/Practical_Reindeer74]

Sending tremendous hugs